LIFE RAFT GROUP INC

Our goal is to provide support for innovative research projects, both through direct funding and by expanding our role in gathering and analyzing real-world data and real-world evidence to further GIST research, and to complement traditional lab-based and clinical trial data. This supports our mission to enhance survival and quality of life for people living with GIST by providing information without the lethal time lag that often occurs with traditional research findings.

We will expand our efforts globally and will continue to provide opportunities for medical professionals to both engage with one another and with our patient base. Many of the roadblocks we face are due to the nature of the rare disease landscape. Funding for rare disease efforts is restricted and patients face treatment challenges due to the small pool of medical experts. Researchers face challenges, as they are dealing with a smaller pool of subjects.

As a result, we need to continue to pool resources through collaborative efforts, both for funding and for expansion of the available patient cohort. These challenges require that we continually seek creative solutions, evaluating at every step, and not losing sight of our goals.

We work in four major areas to implement our strategies:

LEVERAGE THE PATIENT PERSPECTIVE TO DRIVE INNOVATIVE SOLUTIONS IN CANCER RESEARCH
(Patient Registry - Tissue Bank - SideEQ)

We gather relevant real-world patient-provided evidence through our platforms and maintain clinical histories that are tied to tissue stored in a repository. Our side effects management tool, SideEQ, enables us to analyze data and provide tips for personalized side effects management, thereby helping patients maintain adherence to treatment. This quality-controlled data gives us the ability to share information that can impact survival and quality of life in a time-sensitive manner.

EDUCATE AND EMPOWER PATIENTS TO TAKE A LARGER ROLE IN THEIR CARE
Our research has shown that educated and empowered patients have improved survival rates. We accomplish this by education, training, outreach events, and by the support provided to our patients from mentors and local leaders. These programs, publications, and efforts include Expert Patient Training , GIST Days of Learning, LifeFest, Webinars, LRG Science, Newsletter, GIST Mentors, and working collaboratively with Global and State Advocacy Leaders.

ACCELERATE RESEARCH OUTCOMES THROUGH COLLABORATIVE EFFORTS
The rare cancer landscape does not provide the awareness and funding that can support widespread research efforts. Therefore, we recognized that we need to pool our resources wherever there is sufficient synergy to accomplish our goals. Our collaborators include Pediatric & SDH-Deficient GIST Consortium, Columbia Collaborative Research Project, Project Surveillance, NIH Clinic, Virtual GIST Tumor Board, GIST Research Team, Testing Initiative and working with new investigators to enhance their research

INCREASE ACCESS TO EFFECTIVE TREATMENTS WORLDWIDE
Working with other global organizations and leaders, we are actively involved in campaigns to increase patient access as well as working with individual patients to help them receive treatment. We are actively engaged in patient advocacy. We present an annual GIST Awareness Day, provide support and information to international patients and work to change pathology and treatment guidelines.

By leveraging these four pillars, we plan to accomplish our near and long-term goals. For the past 18 years, the LRG has employed these strategies that have resulted in doubling survival for our patients, dramatically increasing our global reach, impacting treatment guidelines, fostering clinical innovation, and connecting young investigators with seasoned experts to expand the GIST knowledge base. We believe these strategies will continue to be effective in the future.

The Life Raft Group employs a staff consisting of 14 full-time and 5 part-time employees. We also employ two consultants and have a dedicated Board of Directors with eleven active members. Our work is supported by x number of volunteers, including 41 state leaders and 57 Global Liaisons.

Our staff has a broad base of expertise in multiple subject matter areas that are relevant to our strategic tasks and hold a variety of academic degrees.

We are, by nature, a collaborative organization, working with pharma, academia, private industry, government and other non-profit organizations globally to achieve our goals.

For example, a partnership we developed with the National Institutes of Health (NIH) resulted in the development of an annual clinic primarily for pediatric patients with a rare subset of the disease community we serve. This, in turn, resulted in a global consortium of clinicians, researchers and patient advocates that have worked together to develop research projects and have influenced the changing of clinical diagnostic guidelines. The clinic has been replicated globally.

With an annual operating budget of $1.2 million, the LRG is supported by donations, fundraising efforts, grants and sponsorships.

As our Regional Patient Registry continues to expand into other countries, and we widen the scope of our Global Surveillance Team of medical experts, we will be able to provide expanded educational efforts, derive additional data for the development of treatment strategies, and help patients obtain access to quality medical care.

Since its inception in the year 2000, the Life Raft Group has grown from a small group of patients and caregivers gathered around our Executive Director’s kitchen table collecting patient-provided data on index cards to become the largest patient support organization and provider of real world data for patients with Gastrointestinal Stromal Tumor.

From 25 patients in its first year to a patient registry with over 2,000 members and a website reach of over 18,000 visitors per month, we have established ourselves as leading experts in the field of GIST support, advocacy and research.

• LRG’s Research Team has collectively published over 400 GIST-specific studies
• LRG’s Pediatric and SDH-Deficient GIST Consortium has influenced diagnostic treatment guidelines.
• We have influenced the direction of research and have contributed to the overall body of GIST knowledge; an early survey we conducted showed that side effects from the primary treatment for GIST often improved over time--important information that we were able to share with the pharmaceutical company that produced the drug, as well as with our patients.
• Advocacy efforts have supported legislation that impacts cancer patients both nationally and internationally (21st Century Cures Act, Ricardo Soto Law (Chile)), and has aided hundreds of patients in obtaining quality treatment.
• Our educational programs have empowered patients and caregivers. Data from our Patient Registry has shown a higher survival rate for our members, which can be correlated with their higher level of disease-specific education.